Heidi is now pushing for states all over the country to test for the disease in newborn screenings and health departments having infant blood in a freezer makes that possible. She said:

Without all of those samples, they can't do research for rare diseases.

In fact, the remnants of Samantha and Louie's blood, saved for years in that freezer, are now being shared with state labs all around the country so those states can develop their own tests.

Heidi worked closely with the state’s newborn screening team and the condition that effects Samantha and Louie is now tested for in the state of Utah.

Heidi says that what is left of Samantha and Louie’s baby blood panels are now being shared with state health departments all over the country so that those states can also learn what to look for to know if a baby has creatine deficiencies.